Busy couple of weeks coming up

Hi 

today turned out busier than expected. I thought I was off to uclh for a pre-trial baseline CT scan, swinging by the trials unit en route for a few blood tests. I expected to be finished in time to pick up lunch from the groovy street food stalls in Fitzrovia. 

No such luck. The oncologist was furious with Maidstone for their lack of kidney action and fixed up a Mag3 (radioactive injection to check kidney function) there and then. 

So off I trundled up Tottenham Court Road to the nuclear medicine department. Mag3, quick CT scan then back to the trials unit for IV fluids. 

The results started coming through. There are infection markers in the urine and the kidney has packed up. So now we are waiting on a call from uclh’s urologists to see what they say. That will influence what happens next - go ahead with trial and sort out the stent in due course or sort out the stent and delay the start of the trial? All plans in disarray. 

Oh, and both my GP and my oncologist can feel my liver now suggesting it’s enlarged. CA125 has topped 2,600 (normal is less than 35).

It’s a good job I’m used to living with uncertainty  

xx

Oh Daloni, its never ending isnt it. Hope they can sort out your kidney so you can start the trial asap. I do wonder now about the antibiotics i took a few times for various things in the year before i started Pembro and if they were the cause of my Colitis !!!

I dont see Onc till 18th October for scan results which i had first week in September, never waited as long for results. Just found out need a knee replacement and seeing knee surgeon on 22nd for that but wether i have it done will depend on my scan resutls. Hope they get your pain sorted soon. Lynn 2xx

Hi

It does feel never ending - must be the same for you. Is your knee giving you pain? I imagine so. And what a long wait did scan results! I have my fingers crossed for you 

xxx

Daloni

That sounds like quite a day. You do so well to keep so positive. I always performed better once I had a plan. I hated the uncertainty of not quite knowing what was next. I hope you can get started on the trial soon. Meanwhile three good things keeps us focusing on the good bits 

Polly

Hi Daloni, I have just caught up with this post and threads!

Well, I leave you for two weeks to go on holiday and "all hell breaks loose" and of course you, being you, just get on with it! What can I say! If life depended on how many people were routing for you, you would get your card from the Queen, no problem!

Its the uncertainty that is hard to handle so I hope they decide what route they are going down aand get on with it! I will be in touch, we fly home in the morning! Take Care!

Hi Ruth, I was so pleased to read you are starting a target drug. It was a target drug (Dabrafenib) I got on compassionate grounds in August 2013! I came off it Sept 16 but somehow it is still working! My oncologist can't quite believe it either that I'm still here!

I do hope Lenvatinib works as well for you and regarding the side affects, this is a more modern drug than Dab so I do hope the side affects will be less severe! I think with every new drug, things improve greatly! I've got everything crossed for you! Good luck!

Safe journey anndanv! I do hope you have had a wonderful holiday and I’m looking forward to hearing all about it 

I had a call from the trials unit today. The current plan is to go on Tuesday for pre trial bloods, Wednesday for treatment staying overnight and coming home on Thursday. The travel costs are going to be eye watering. 

Xx

Dear Daloni,

I skip a couple of days just to find out all this.  

Im sending you my very best wishes and love.  Hope your doctors treat you right.

You  are in my thoughts and prayers! Please keep us posted.

Hugs,

Millie

Hi Annette and Daloni,

thank you both for your kind messages.

i will let you know how I get on.

i will be glad when the MRI and the CT are over on Tuesday. I have some Valium to take to help me cope with the MRI.

then we are taking the dog to a hotel in Cornwall  for 5 days before I see the oncologist and start on the tablets.

love Ruth 

Hi Daloni, Thanks we had a terrific holiday! Well, it's all happening this coming week for you! Great you didn't have too long to wait! However, it's going to be a really busy week so I was pleased to read you were in bed resting and crocheting at the same time! Never an idle moment eh? You will be surprised to hear that (because of you) I took some knitting with me on holiday to keep me busy! Good luck!